Effective ways of Investing in Health, the Expert Panel will maintain a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area.
RD-Connect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Together with the ERN EURO-NMD, RD-Connect is organising a series of webinars aiming to train ERN members at all levels. The webinars will let you learn how the RD-Connect tools can help you in your everyday work.
Informative materials, where you will find out what we've achieved in the first year, what the plans are for the second year, and to gather some information about the ERN and MetabERN?
Prof Maurizio Scarpa (MetabERN Coordinator), Francjan van Spronsen, MetabERN Representative from Rijksuniversiteit Groningen (NL), and Lut de Baere responsible for the MetabERN Patients organisations management, have recently participated in the policy Round Table on Phenylketonuria (PKU)
We are glad to announce that our MetabERN Coordinator, Professor Maurizio Scarpa, has been recently invited to speak at an event that Genetic Alliance UK, the charity supporting all those affected by rare, genetic and undiagnosed conditions, hold on Monday 9 July.
A patient survey has been created to help understand what are patients' needs. The survey has been translated into 7 languages.
The European Commission adopted a legislative proposal for a new European Social Fund Plus (ESF+) Programme in May 2018, based on the proposed Multiannual Financial Framework for the period 2021-2027.
Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.
CDG are a family of rare metabolic diseases with low visibility, without targeted therapeutic solutions and generally unknown among the medical and scientific communities.
Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the availability of new research grants to support the study of eight rare diseases. The initial application deadline is July 16, 2018.